I get a lot of emails and questions about Anna's button from parents being faced with the decision and also from parents whose child already has a button of another kind. I looked back at my previous button post and realized it was not all that informative because the button had just been placed and we were still new to the game (it does have a lot of pictures of the button though if that is what you are looking for). It has been almost 6 months since Anna's button was placed and I feel that my knowledge base it much broader now and that maybe I should share a bit of the questions and answers to them. I am by no means an expert but can tell you what experience and research have taught me:
Q: How did you finally decide your child had to have the button?
A: I think the point at which you decide this is different for every parent/child and every situation. For us, we had tried everything we and our team of doctors knew to do and Anna still wasn't eating. We were on the fence for quite a while. Anna was not gaining weight but not loosing either. Then for whatever reason she went on a total food strike and would scream and cry at the sight of food. She began to loose weight and was really looking sick. She was pale, her eyes had dark circles under them, her hair was dry and brittle and not growing.
Q: Do you have any regrets about having the button placed?
A: My only regret is that we did not do it sooner. Once the button went in life was so much easier. We allow Anna to eat what she wants during the day and then feed her through the button at night. The struggle at meals which at times could drag on for hours was gone. Yes, we have had problems with vomiting but that would have happened button or no button because of the reflux and gastroparesis.
Q: What are the advantages of the Microvasive Button verses the Mic-Key or other types?
A: From what I understand, the Microvasive is one of the only "one-step" buttons. That means when Anna had her button placed she did not have to have a long G tube and then have it switched out 6-8 weeks later. The button she has now is the same one that was placed on her day of surgery. The microvasive button generally lasts 12-16 months before needing to be replaced. The Mic Key has to be changed much more frequently although it can be done at home. Other types usually have a balloon that you fill with water and if you do not fill it just right you will have more leakage at the site. We have had minimal leakage. All buttons will leak a little- there is no avoiding that.
Q: What are the disadvantages to the Microvasive Button verses other types?
A: Because the Microvasive has a hard bumper on the backside and no water balloon it must be replaced while the child is sedated. It takes something like 25 lbs of pressure pulling on it to remove it so the child should not have to be awake through that misery. The only other thing I can think of is that with the Mic-Key the extension set locks into place and with the Microvasive it does not. We have learned to plug the extension set into the button and then run it through the side of her diaper so if the tube gets pulled it pulls from down lower and the "plug in" stays plugged in.
Q: Do you keep a dressing over the button site?
A: We do. Not everyone does. I have a good friend who said her son's site looked worse if they kept a dressing on it. We have noticed much more difficulty if we don't keep one on. We spray the site with SilverKare and put SilverKare on the gauze and keep a dressing on it. I do not like the leakage to get on her and it also bleaches out her shirts if it gets on them. We change the dressing at least once daily. I highly recommend SilverKare. It is the best product we have found to keep the site healthy.
Q: Have you had any granulation tissue?
A: In the beginning we did. Our GI gave us a script for some steroid cream that we used 3 times a day and it went away pretty quickly. I really think keeping the dressing on cuts down on the granulation tissue as well because it keeps the button from spinning too much. It needs to be turned once a day but too much more than that and the granulation tissue seems worse (that is purely my observation).
Q: Our button keeps popping open. Is there a solution?
A: Anna's frequently pops open, too. There are only 2 solutions we have found. The first is just to tape the "lid" down to her dressing during the day when we are not using the button. The other is to buy those tiny little hair rubber bands and place one over the end of the button with it closed. That will keep it closed as well but seems to encourage Anna to play with it more too.
Q: Does your child try to pull the button out?
A "No. She has the dexterity to close it if it opens but does not pull on it.
Q: What does your child call her button?
A: Anna has great receptive language but is behind in "spoken" language so she does not call it anything. But if you ask her where her button is she will point to it. So I guess we call it her button.
These are the questions I get most often. If there are others please email or comment them to me and I will be happy to answer them the best that I can.